Winter rads 2014-2015

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  • JustJean
    JustJean Member Posts: 327
    edited January 2015

    I was incorrect. It was 1:49 when done. YAY!!!!!


    Now waiting for an RO to look at my skin. It's not looking good. Then off to see the MO.


    BeachBum, I love Drug Mart. They know me well there! Oh, it's Lake Farmpark in Lake County in Kirtland. Show starts on Feb 14, I think. If you want to go, let me know. Maybe we can meet up!


    Sorry so short. Typing on Kindle. Later 😃

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  • mqt64
    mqt64 Member Posts: 103
    edited January 2015

    kpmicmill.  Just joined and start my radiation on Monday.  It's encouraging to see all the women making it through.  I've been following this discussion for a little while.  Anyone out there have trouble with their Methylline Blue injection?  Mine extravasated (leaked) into the subcutaneous tissue and cause tissue necrosis and an open wound requiring surgery to clean it up and close the wound so I could have radiation.  Don't know how that will affect the side effects.

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  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited January 2015

    CONGRATS to you Hockeycat!!!  It is nice to hear from you again.  Go Blues!!!!!

    JustJean - YOU DID IT!!!! HOORAY!!!!! 

    mqt64 - Welcome to the group. 


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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2015

    Welcome to the BCO community mqt64, We are sorry to hear about the complications caused by the Methylline Blue. We hope you might hear from some others. Here is a link to some information on our site Dye injections. Keep us posted on your experiences with Radiation Therapy and again welcome to the forum. The Mods

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  • CoyoteNV
    CoyoteNV Member Posts: 575
    edited January 2015

    This is our list of Winter Warriors as of January 21, 2015 - I'll do my best to keep it current. Let me know if it needs a change. 

    October / November Start

    MeneK – Oct 24 ThumbsUp.................... MagicalBean - Oct 28Happy......... Mmtagirl - Nov 3 Happy

    MarieBernice6234 - Nov 4 Happy ... Hope50 - Nov 5 Happy..................  dennyvol - Nov 5 Happy

    CAS4 - Nov 6 Happy........................ Beachbaby65 - Nov 4 Happy.......... CoyoteNV - Nov 10 Happy

    Lush61 - Nov 13 ThumbsUp.................... Rosa54 - Nov 13 ThumbsUp.................  Beachlady28 – Nov 17 Happy

    Nomatterwhat - Nov 17 Happy......... LMVerma  Nov 18 Happy................ katieC12 – Nov 18 Happy

    Lorrilynne - Nov 18 ThumbsUp.............. Gongshow18 - Nov 20 Happy.........Yikes1 - Nov 20 Happy

    Birdgirl11 - Nov 23 Happy.............  Perfectlyimperfect39 - Nov 23 HappySingsing1020 -Happy

    December Start

    Pita119 - Dec 1 Happy.................. SandyLovesLucy - Dec 1Happy......... AnasNana - Dec 1 ThumbsUp

     HockeyCat - Dec 3 Happy......... . CanuckMom Dec 4 ........................  MeanMomto3 - Dec 4

    JustJean - Dec 5 Happy...............  runningcello - Dec 9 ....................... carynbrit - Dec 10 Happy

    eileenpg - Dec 10  ..................... ForHisGlory - Dec 10 ..................... Davida58 - Dec 10 Happy

    SCMom - Dec 11 Happy.................ILCMom - Dec 15...........................  Linzer – Dec 16 Happy

    WndrWoman - Dec 16 .............. sweetbanker - Dec 16 ....................  labelle - Dec 17 

    Slavrich - Dec 27........................InGodshands - Dec 18 .................... Catie57 - Dec 18

    lilactulip - Dec 18?..................... PoppyK - Dec 29 ............................. kpmacmill - Dec 29 

    Jlynn13 - Dec 29 ...................... gretchy - Dec 29 .............................  Bellegirl - Dec 30

    January Start

    reader425 - Jan 2..................... Purrrrana99 - Jan 5........................... Cath57 - Jan 5 

    fossf - Jan 7 ...............................ulubelle1 - Jan 8 .............................. lescover - Jan 8 

    Nancy6540 - Jan 12 .................. Saltygirl - Jan 12 ............................ Fionascottie - Jan 13

    Magdalene51 - Jan 15............... quiggy - Jan 19 ............................... Bippy625 - Jan 20

    Dacre - Jan 20 ........................ feelingoverwhelmed - Jan 20............. KYBLUEEYES - Jan 20

    Beachbum1023 - Jan 22 .......... Cavalier - Jan 22 ..............................nqt64 - jan 26

    Windgirl - Jan 28 

    January Start Dates Not Known

    KGotThis - Jan ? ..................ckr1956 - Jan ?

    February Start

    JeniferE - Feb 1 ........................ LARock - Feb 2 ............................. Chrissie29 - Feb 2

    FebruaryStart Dates Not Known

    CassieCat - Feb ? .................... Texas94 - Feb ?

    No Start Date Yet

     Shayne36 - ? ......................... knittingPT - ? .....................................Cavalier - Jan 22

    Sjacobs146 - ? ......................... gemmafromlondon - ? ..................... chrissie29 -?

    zjrosenthal  - Rads delayed by surgery, until ? SadHonorary Winter Warrior

    Warriors who stopped for a visit, but didn't stick around. No start date determined.  We wish them well.

    Minnielee; surrrana99; Coloradocancermom; Shuf; bjeaneg


    Happy= Reported Completed

    ThumbsUp = Should be Complete by now.

     

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  • JustJean
    JustJean Member Posts: 327
    edited January 2015

    Oh look, I got my smiley! Don't I get two for being so whiney? LOL...

    No certificate, no offer to ring the bell, so thank goodness I didn't have to pull back from the offers.

    Got a script from the RO for Silvadene. And the good news? The really badly burnt parts are starting to peel and oh my it's nice to see that new skin under there.

    Saw the MO. Another PET scan in 3 months, a change to Aromasin (anyone on that? I've been on Arimidex for 5 years...), and she's also pretty sure that I'm now Stage IV because of that last PET. We just won't know for sure until we can biopsy some lesion and right now they are too small. So the good news (rads done) got smashed by the really really really bad news (probable mets).

    May the Aromasin work for many, many years...

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  • CassieCat
    CassieCat Member Posts: 1,257
    edited January 2015

    I'm not certain of my start date, but I'm guessing somewhere in early- to mid-February., 6.5-7 weeks of treatment.

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  • Carynbrit
    Carynbrit Member Posts: 51
    edited January 2015

    One more session tomorrow and Ii'll be done.


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  • chrissie29
    chrissie29 Member Posts: 121
    edited January 2015


    Had my simulation today with radiation start date of 2/2-5 weeks to all 4 sets of lymph nodes and chest wall with 1 week boost to incision.  Having to stay in the simulation position with my arms overhead for 40+ minutes was horrible-not because of my surgical site but because of pressure on my right arm causing it to fall asleep.  They did let me move them once half way through.  I hope being in the position for the actual treatments will be better.  I found out I have bad heart anatomy.  My heart doesn't drop away from my chest with my deep breath but rather drops down so the RO said she will have to get creative with how she is going to do the treatment to minimize the radiation to my heart.  She showed me my CT scan and there is really not any space.  She told me that I shouldn't lose sleep as it is her job to figure out what treatment will work to hit the areas while minimizing the radiation to my heart.  However, I am feeling anxiety over starting radiation - never felt this way over the chemo.  Please tell me this gets easier.  They gave me recommendations for a skin lotion to start using now.  Does anyone have recommendations they felt worked well? 

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  • CoyoteNV
    CoyoteNV Member Posts: 575
    edited January 2015


    CassieCat - Welcome to our band of Winter Warriors.  Everyone here is so very supportive - which is something 99.99% of us really need.  Most of us who have been down the same path you are taking feel that rads are much easier to handle than chemo. 

    Carynbrit - Hooray!!!  Have a great day tomorrow.

    JustJean - Would I fail you?  :)  Of course you have a smiley.

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  • CoyoteNV
    CoyoteNV Member Posts: 575
    edited January 2015

    chrissie29 - I saw your post just as I posted my last post.  Welcome to the Winter Warriors rads support group.  There are several left side rads gals in this group that I am sure you will hear from soon. It sound like your RO is right on top of the situation and will resolve the heart avoiding issue.  I'm not even very good at recommending lotions because I didn't really have many skin issues.  Here again, there are some real experts here.  It all seems so scary - I was absolutely terrified - but after the fact, it was so much easier than chemo.

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited January 2015

    Good going JustJean and Hockeycat on finishing rads.

    JustJean such a beautiful quilt. How proud you must be to have it in the show and to have accomplished that during a difficult period.

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  • CassieCat
    CassieCat Member Posts: 1,257
    edited January 2015

    Thank you for the welcome, Coyote. Every thread I join on this site is terrific. What a big-hearted group of people we all seem to be. :) They're doing my CAT scan on 2/4 so that they can create the computer model and hence my not knowing quite yet my start date.

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  • PoppyK
    PoppyK Member Posts: 1,805
    edited January 2015

    Chrissie, The simulation lasts much longer than the rads treatment, so that should help with your arm issue. The first rad will be a little longer than the ones that follow. When I first started, my arms got sore, too. Now it's not a problem. My RO recommended pure aloe gel with no alcohol. Slather it on twice a day (after rads and before bed). If I have a strong reaction (which I haven't yet), she will prescribe something. They did warn me about my bra band putting pressure on the tender tissue on the underside of my breast. I'm now wearing a very loose and stretchy bra.

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  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited January 2015

    Nice to see you again, CassieCat,  You will zip through rads.  They are so much easier than chemo. 

    Chrissie - Welcome to our group.  I was not a leftie, but I was definitely terrified.  But, it is so much easier than chemo.  It usually took about 10 minutes from the time I got undressed to the time I got redressed.  I did use a lot of Aquaphor after each treatment and made sure I had a t-shirt on under my bra.  My doctor prescribed Silverdene for me and I used it in the mornings and at night. I didn't have any skin issue except underneath the arm peeled.  The first couple of weeks my techs had to remind me not to use lotion 2 hours before radiation, because the area needed to be dry.  You will be done with treatment before you know it.  Piece of cake!!!!!


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  • chrissie29
    chrissie29 Member Posts: 121
    edited January 2015


    Thank you gals for the info.  The radiation tech told me they would take an x-ray before each procedure to make sure I am lined up.  Did others have this?  I am thinking of all of that radiation with CT scans today and the upcoming radiation treatments and it seems like a lot. 

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  • PoppyK
    PoppyK Member Posts: 1,805
    edited January 2015

    I have xrays once a week. They use the tattoos and sharpie marks to line me up with the machine, which shines a light with measuring increments onto me.

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  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited January 2015

    Has anyone missed two treatments in one week?

    I have a business trip coming up in March, if I go, I'd have to miss two treatments. I was told that they prefer that patients get at least 4treatments per week. Just wondering what my chances are of them letting me miss 2

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited January 2015

    I only had 3 treatments Christmas week and they said it was okay.

    I have 3 xrays before each treatment for positioning. The RO said the dosage for the treatment is adjusted to take this into account.

    I have had 24 treatments and have to now put Silvadene on a couple of peeling spots in my armpit. Be sure to put cream, gel or whatever you use in the armpit and below it from the start.

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  • eileenpg
    eileenpg Member Posts: 467
    edited January 2015

    Sjacbos= I have now missed 4 days in a row twice. Both times I had to stop due to side effects. Arm swelled and low WBC. I went this Monday and have been off since due to WBC. Was placed on Neupogen for 3 days and blood rechecked this Friday. If all well can start again Mon. My tech told me super common people have to stop and my RO was not concerned.

    Chrissie=I get every every 5 treatments. It is a medical guide line they must follow to make sure they are giving you radiation in correct position. There may be some shifting.

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  • WndrWoman
    WndrWoman Member Posts: 333
    edited January 2015

    Just looked back and forgot one thing (only one so not bad). I was told not to use cream or anything for 4 hours before treatment.

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  • kpmacmill
    kpmacmill Member Posts: 85
    edited January 2015

    Chrissie - In the first week or two I had x-rays everyday, now they just do one a week to make sure everything is still lined up. I was concerned about all of the extra exposure too.

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  • HockeyCat
    HockeyCat Member Posts: 222
    edited January 2015

    Thank you everyone! It feels so good to be done. Rad tech gave me the diploma and hug. :) They told me to continue on skin care until the follow up but my skin is healing well. I used aloe vera gel and aquafor. I put aloe vera whenever my skin felt burnt and painful, then I put aquafor on top to keep moisture in. This combination worked well for me. I had xray once a week.

    Thank you Coyote for keeping track of not only start date but also completion and putting smiley face!

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  • texas94
    texas94 Member Posts: 204
    edited January 2015

    Hi ladies! I begin rads early February after 6 months of chemo followed by an ALND. This diagnosis is my 2nd time around, so RO says my rads will be "extremely" aggressive to my entire left chest, side, underarm, and all the way up my neck. I'd love to hear from anyone else who's had rads after an ALND! Also, I know everyone is different, but I've heard people with fair skin don't fare as well through rads. Is this true?


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  • MagicalBean
    MagicalBean Member Posts: 362
    edited January 2015

    JustJean-glad to hear you're finally done with rads. It's such a relief. Sorry about your other news. RATS. Hopefully, once they can biopsy, the results will be more positive. Aromasin seems to be very effective so I have little doubt it will be for you too.

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  • Carynbrit
    Carynbrit Member Posts: 51
    edited January 2015

    Congrats to those finishing!

    I'm done. Last one was today, have follow up in 2 weeks (also will talk about Tamoxifen.ugh).. but yup.. so happy to be finished.. will be weird getting up in the morning and getting dressed and 'staying' dressed the entire day. I spent a long time oh so carefully removing the permanent marker from my breast this evening...that was strange after having it on for gosh nearly 7 weeks! and now on to the process of healing and the like.


    <3


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  • PoppyK
    PoppyK Member Posts: 1,805
    edited January 2015

    Caryn, Congrats on being finished with rads!

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  • JustJean
    JustJean Member Posts: 327
    edited January 2015

    Welcome, texas!

    Thanks, magicalbean... I hope so too. It's hard being in limbo.

    Congrats Caryn!!! WTG!

    I'm off to bed. A full day at the first job and a couple of hours at the second have done me in.

    JJ

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  • CoyoteNV
    CoyoteNV Member Posts: 575
    edited January 2015

    texas94 - Welcome to the Winter Warriors rad support group. I'm sorry that you are experiencing a recurrence of this dratted disease.  I'm also a second timer and there are a couple others here.  It sounds like your program will be more aggressive than mine was, although mine covered a lot of territory.  I think that I have fair skin because I always use the lightest shade of cosmetics and my white undies aren't much different than my skin color.  I had some itching along my collarbone, and in the final days some discomfort in my arm pit.  I still have inflamed ribs a month after my final radiation.  It was an area of focus because that was where the tumor recurred.  So as far as skin issues are concerned, I had none that were note worthy.   My RO told me that the larger the area of exposure, the higher the risk of skin problems.  All in all, rads are far easier than chemo - I'll put my money on you doing well. 

    Carynbrit - Hooray and congratulations. Enjoy your well deserved rest. 

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  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited January 2015

    Welcome Texas94!!!  I have fair skin, in fact, I can't be out in sun for longer than 10 minutes or I get burnt and then blister and then turn pale again.  I went through rads just fine, with a little help from Silverdene, Aquaphor and Aloe Vera.  My worst burn was under my arm. 

    Carynbrit - Congrats to you!!  You are one step closer. 

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